Tuesday, February 26, 2008

Hunter

In the past I have been very conscious of protecting the identity of all of my students while sharing their stupendous artwork, clever writing and funny stories. Any pictures I post of them are always taken from the back for this reason. But today there was an article in Newsday featuring one of my fantastic students that I really wanted to share.

This young boy is a true artist. His drawings are very sophisticated and he writes with the wit of the innocent. (He wrote a fantastic story for our last writing celebration about his dislike for doing homework which made me smile.) Otherwise he is like any other child; sometimes happy, sometimes grumpy, but always a pleasure to have in class.

But Hunter is also dealing with some heavy issues which are outlined in this most recent article by Jamie Talan. What strikes me most is how small and young he looks outside of the context of the classroom. I always think this about all of my students when I see them in a different setting. To me, they are my world for a good part of my day, week after week, month after month and I don't really see them as little because they all have such big personalities. But they are small and young and deserve all the care we can give them. I have included the article below.

Hunter Cavanaugh has endured more stares than most 7-year-olds could tolerate. His face and neck have been disfigured since birth by benign tumors, reminiscent of those of John Merrick, whose life story unfolded in the classic movie "The Elephant Man." Hunter, who does not have the known genes linked to neurofibromatosism, or Elephant Man's disease, wants the "tumors gone," and a team of specialists at St. Luke's-Roosevelt Hospital Center in Manhattan has taken on the daunting task.

They do not have a gene test they can do to confirm a diagnosis but presume Hunter has a rare disease called Proteus syndrome, which causes abnormal growth of tissue, bones and skin and is, in fact, the disease Merrick had.

Preparatory Procedures

In preparation for Hunter's groundbreaking surgery, the Manhattan first-grader, who also is profoundly deaf in one ear and hard of hearing in the other, underwent several operations during this past year. In one of the procedures, Roosevelt doctors operated on his eye socket to push back a tumor resting close to his optic nerve, threatening blindness. In another operation they built up the bone in that socket because the weight of the tumors had caused it to drop inches, and they also aligned his eyes and made a bridge for his nose that had flattened. Finally came the surgery Hunter and his family had been waiting for: the removal of the tumors and the sculpting of a face that would not stand out in a crowd. "I want to go to school, and I want my friends to say, 'Look, Hunter has his tumors out," he told his parents.

No Guides for Surgery

So earlier this month, Hunter, who breathes through a tracheotomy tube, personally helped doctors start the project -- the first operation to restore his appearance. When doctors attached the anesthesia hose to the hole in his throat, the boy reached up to help them position it. Within moments he was asleep. With only the child's face exposed, Dr. Peter Costantino, co-director of Roosevelt's Center for Cranial Base Surgery, and three of his colleagues entered the face through a cut made near the left ear. Inside they found a mass of tumor the consistency of hard jelly. It was dense and spread in a wide swath from his cheek to his ear. Like an explorer, Costantino first had to hunt for the facial nerves so he didn't damage the boy's ability to move his muscles.

"This is a challenge. None of the guides we use are present," he said to his team as he worked deliberately, using a thin stimulating device that detects nerves. When he finally found the nerve he was searching for, it was distorted and fragile. He had to remove the insulation from his tool because the tissue was so hard to penetrate. Then he asked technicians to hand him a yellow wandlike device used to burn away tissue, and he proceeded on the benign tumor, piece by tiny piece. At one point during the five-hour surgery, the team was serenaded by John Lennon's "Beautiful, beautiful, beautiful boy" as they labored, painstakingly avoiding the nerves.

After finishing the left side of his face and sculpting a new ear for Hunter where his had been deformed, the doctors decided to schedule another surgery for the smaller tumors on the right side. Hunter's face was too swollen to determine symmetry, and they thought his body had been through enough. Costantino explained, "We wanted Hunter to have even features. We wanted everything lined up so that he looks more normal."

Long Road Ahead

Doctors say it will take many surgeries and time before they will know whether the child can get his ultimate wish. "It's hard when he's so young," Costantino said. "He'll have to grow into his face. There is still a lot to do," including rebuilding his jaw and nose. A day after the surgery Hunter's father, Eric, said his son's face, even with swelling, was half the size it had been.

"And the ear was a total surprise," Eric Cavanaugh said. "It wasn't even on the agenda. "The story of Hunter's struggle first appeared in Newsday in October 2006, and afterward the surgeons at Roosevelt reached out to help him. The doctors and hospital also picked up the costs of the procedures.

It is only in recent years that Hunter seemed bothered by the insensitivity of strangers. He has a sharp sense of humor and is obsessed with superheroes. He was invited to the opening of last year's blockbuster "Spider-Man" movie by creator Stan Lee's team and met the star, Tobey Maguire. He even received a home visit from his superhero.

"His attitude is great," his father said. "He's a rock. He is so tough. He goes through so much, and he's so upbeat." His mother, Bianca, added, "We wanted Hunter to have what everyone else does, an opportunity to walk down the street without people staring at him.

"There is hope the couple's dream for their son will happen."There is no miracle at the end of this process," Costantino explained. The disease is not fatal, but the tumors could grow back. However, Dr. Milton Waner, part of the team reconstructing Hunter's face, added there are some new medicines that can slow the tumor process, and "we can hope to give Hunter a better quality of life."

I have to tell the story of how Hunter illustrated the dream of the boy in the trundle bed of sailing the sea of herring fish and stars with the old moon wishing him along. No wonder he connected so vividly with "Wynken, Blynken, and Nod." He was the only student to visualize the dream and the dreamer of the poem--all others illustrated only the dream. What yearning he must feel. I am so used to him being around and coming to the library, I forget what he deals with and the feelings that must follow him to bed.

Hey Gary - yes, I MAY be coming to New York! Well, I'm coming for vacation in July, but also applied for a few jobs in NYC (at Baruch and Columbia), and also at Buffalo State. Cool, eh? I have a phone interview at Buffalo State next week - the other applications I just put in not too long ago. Cross your fingers and toes! Hahahaha!

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